Brinsupri follow-up

Hello all. Just an update since I started Brinsupri in the beginning of October. My pulmonologist took me off of it about a week ago. I too, experienced an URI right after starting the medication (unsure whether or not it was related), but if anything, I feel like my symptoms have worsened. I feel like I was having more phlegm production, but it was lighter in color. I would not say I necessarily felt better, but did give it a try for a solid 2 months.

The primary reason why I decided to stop was because not only was I not experiencing any benefits, but I was experiencing many adverse effects. I started with severe nausea and headaches (the nausea got a little better over time), but my nose feels more runny, and I also started to notice dry/cracking skin on my palms and it developed into a red, itchy rash. I started to have spots on my palms that also looked sort of like they were peeling. I also developed red dry spots/a rash all over my face that ended up peeling and was very uncomfortable. So, for the time being, I am taking a step back but would love to continue to hear what other’s experiences are.

@sdugan001 Sorry to hear about the skin side effects. Have the symptoms started to resolve since stopping the medication?

I, too, experienced increase in phlegm production around the same time you did. A week to two later it began to reduce in quantity and color. Seems easier to cough up but none of this is easy!

@scoop you’re so right!! I’m currently treating with Fluouracil for facial AK’s. Pale skin in Florida needs to be consistently monitored and I do. I really just wondered if anyone else had heard about this potential side effect, as I had not. I intend to proceed with Brensupri with the appropriate monitoring and hope for some relief as others have experienced. Thanks for your wise words.

@cdward1028 N-Acetyl Cysteine — it’s a mucus thinner.

@sharonednaramsey This is from Google AI Gemini. I hope this helps. There is also information on the NIH PUBMED.
The benefits of Brinsupri, a prescription medicine used to treat non-cystic fibrosis bronchiectasis (NCFB) in adults and children 12 years of age and older, as indicated by clinical studies, include:

* **Reduction in Flare-ups (Exacerbations):** Studies showed that patients taking Brinsupri experienced a reduction in the annual rate of pulmonary exacerbations compared to placebo, by around 19.4% to 21.1% depending on the dose.
* **Delayed Time to First Exacerbation:** The medication helped prolong the time until the first pulmonary exacerbation occurred.
* **Increased Exacerbation-Free Period:** It increased the proportion of patients who remained exacerbation-free over the treatment period.
* **Slower Decline in Lung Function:** The 25 mg dose, in particular, was shown to reduce the decline in lung function, as measured by forced expiratory volume in one second ($FEV_1$), compared with placebo.
* **Improved Quality of Life:** Patient-reported outcomes related to respiratory symptoms also improved with both treatment doses.
* **Targeted Mechanism:** Brinsupri is a first-in-class DPP1 inhibitor that targets the underlying cause of inflammation in NCFB, by blocking the activation of neutrophil serine proteases which are key drivers of chronic airway inflammation.

The web page context also mentions a patient's personal experience that Brinsupri is a medication that takes **3-6 months to experience its full benefits**.

Would you like more information about how Brinsupri works?

Has anyone noticed an increase in weight since taking Brinsupri. I was wondering becasue I lost weight with MAC and bronchectasis , so if this medicine decreases the severity of the symptoms, will it also bring my appetite back. Thank you to anyone who has been on this long enough to know

@renee53 LOL I have gained a few pounds (clothing is tighter!) but I attribute that to strength training and feeling better in general (not coughing nearly as much). I've been on brinsupri for over 10 weeks and I feel that things are beginning to stabilize. Hoping I remain side effect free as it's relatively early.....

THAT SOUNDS GREAT! I have only been on it a few days, but list night, when
the coughing began, the cough was just barely noticeable, but it wasn’t as
harsh and not quite as much mucus. So I take that as a good sign it’s
beginning to do something. Hopefully in weeks to come I will continue to
improve.
thank you so much

Sorry for some of the typo;s. I have low vision due to macular
degeneration. I meant that my cough was better, but just barely yet enough
to that I noticed it. I am so hopeful. I have been struggling for five
years with this.

@renee53 Remain patient with Brinsupri. If you read through this thread you'll see I felt very good weeks 2-3, much less good weeks 7-8 (approx). Now after 10 weeks feeling more like weeks 2-3. They say it takes 3-6 months to stabilize in system. Alas, still at airway clearance 2x day. Good luck.